Tuesday, May 24, 2005

I went up north to my grandmothers this weekend. It was great spending the day with her. She is home from the hospital which makes me very happy, but she is still very weak and having a hard time sleeping. Her heart is failing and there is nothing anyone can do to stop it. I felt sad when I left her house to head back down to the cities because when she passes I am sure going to miss her! She is the most awesome, loving woman you could ever meet. She has lived a long christian life and she is ready to go whenever god feels it is her time. So for the time being I will be going up to spend as much time possible with her as I can. While I was there I went to the cemetary my grandpa and my son are buried at and put that wreath I made there. I took some pics to add for you all to see. I spent so much time up North growing up but now whenever I go back it is so strange to me that it almost seems time stands still there. Everything looks the same as it did 20 years ago. It is so quiet and simple up there. I have to ask myself "Could I live way up in the country?" Parts of me would love it, but I am a city girl and used to living where I do not have to drive 40 miles to find a target or hardware store. lol....... Bill and I have been talking for about 2 years now about moving to Arizona next spring and obviously 2 years later we are still "talking" about it ;) I have lived in MN all my life and am real used to 4 seasons and its a repeated cycle every season. Can't wait for summer because it's SO cold in the winter, but then when summer does get here after a week or two of 90-100 degree days and so much humidity then I'm ready for cold again. And it continues like this all year lol! But I think I have came to conclusion I would much rather live in heat then any cold. I really do not like the snow and all that comes with it anymore. I used to love it. I guess times change ;) It is finally in the 70's again here I have had all my windows open today. I also cleaned all my windows well all on my main level of my house. Its funny how you really learn the do and don'ts of a house the older you get. You really learn what you like and do not like and what kind of yard you like and what kind of trees you like, ect. The woman who owned my house before we moved in was an older lady who was in some garden club. So upon moving in the first spring here I watched ALL these different kinds of shrubs and flowers bloom ALL over my yard near my house, and away from my house. And I tried so hard to maintain them all. But I have no kind of green thumb whatsoever so now 3 springs later I think I succeeded in killing most of the pretty stuff that grew 3 years ago. So now we have begun pulling it all up and trading the shrubs and flowers for some nice rock and brick lol The back of the house was completed last week now we need to tackle the front of the house. I wonder if there is a program called yard upkeep for dummies? Even that may not help me lol........ I am going to add the pics of my sons grave in a little while my puter is running really slow and will not upload the pics right now. Adios

Saturday, May 21, 2005

When I was 18, literally on my 18th birthday I went into labor at 23 weeks gestation, my son Anthony was born after 36 hours of labor. He only weighed 1 pound 3 ounces. He lived for 26 hours and then passed away. He was my first born and it took every inch of my heart and soul to move on from this loss. I have moved on but never ever forgot! I still think about him all the time and miss him. My grandfather had passed away a month before my son did and because of the winter was not able to be buried yet and because of that my grandma came to me with a wonderful idea. It was an idea that comforted me beyond belief. She asked me if I wanted to bury my sweet little angel with my grandfather. So thats what we did, we wrapped him in the cutest little blanket and he was layed to rest in my grandfathers arms to be forever protected! I believe the two of them are having a ball together up there, and looking down on me. I picture the two of them playing ball together, fishing, my grandpa telling him all his good ole stories he told me as I grew up. I swear I never got enough of those stories. I always wanted to hear more, more, more! :) Well every year since my son died I drive 4 hours up north to his gravesite and put a floral arrangement on his gravesite and my grandpas, but usually I buy it from a store. Well this year, today as a matter of fact since I am going up there tomorrow I decided to make one. I think it turned out pretty good considering I have never made one before. I will post pics tomorrow when I get home of it on the holder and totally completed. It's hard to believe he would have been 12 this year! He will always be my little angel!

Wednesday, May 18, 2005

You will see as my story goes on, and by different pictures just how much he has changed in the last 6 years. He has had 3 Cranial Reconstructions done so far, and we will have to go for number 4 next year.

I am not going to put every little detail of the years of Joshua's life just a little of lots of things. So we talked to his Craniofacial Surgeon and chose him as I said last entry. Josh was in the hospital for two months the first time he came home for the first time ever on Dec. 19, 1998 and was only home for 24 hours and got readmitted with pneumonia and was again there for another month. The first year of his life was spent like this. He was never home longer then a week. When he was about 3 days old, we had a social worker from Childrens request to meet with us. She wanted to know how his father and I were doing and handling everything. I will never ever forget what she said to us " That our son was either going to make or break us, there would be no middle ground." I did not take this as an insult but really did not like hearing that. But trust me over the last 6 years I learned quickly what she meant by that. The feelings of sadness, anger, resent, confusion, hopelessness, pain, anticipation, happiness, and more all can really get to you and make it very hard to stay on the same page with your loved one! We swore to each other that we would never get so lost we could not find our way back to one another and its been tough but we are still going! Joshua is extremely lucky to have Bill as his father you should see the two of them together! Man does he love his daddy! Almost from the beginning it seemed everytime we turned around there was something else wrong with our son. It seemed everytime they tested something it was bad news. After about a month of that I broke down one night worse then I had ever I seem to recall and was almost afraid to see his doctors everyday because I was so afraid it was going to be more bad news. We were told "IF" he did make it that he would never do anything, like walk, talk, see, hear, I could not believe that and did not want to believe that. In the first fewmonths I will name some of the things that were told to us by doctors by different tests done. We were told that he was almost all the way deaf, that he could only hear a whisper in one ear, and nothing in the other. We were told he was partially blind. We were told he had a hole in his heart, we were told that he was aspirating his own bodily fluids and was getting pneumonia as a cause of it (sometimes so bad hislungs would be completely whited out, and they would have to intubate him for different periods of times), as a resultof this we were told he would not be able to eat by mouth and put a G-tube in his stomach to feed him, they also sat us down one day and told us they wanted to do a Trach on him, neither I nor his father were okay with that. Call it parents instinct but we did not believe it needed to be done. And this was the first time we challenged what a doctor said needed to be done. They were not real happy with us. We did research and found out all we could about it and still agreed we would not let them do that. So we ended up doing a Nissen Fundoplication, which is when they wrap the top portion of your stomache around your esophagus.Click here for a much better explanation and images http://www.geocities.com/fundofamilies/description.html

After they did this surgery he seemed to do much better as far as the reflux went, but there were still some hard times. As a result of the Nissen he will never be able to vomit (if his body absolutely needed to he could as far as I have understood) he wretches instead. Jumping way ahead in time now 6 years later I am SO glad I did not let them do the Tracheostomy because he would have had it for the rest of his life and there would have been nothing we could have done about it, and we were right he did not need it! One of the times that Josh was home for almost a week he got really sick again. When he was at home he was on a routine that was repeated about every hour and a half period 24 hours a day, with the neb treatments, the apnea monitor, the G-tube feedings, the meds (man there were so many). Well his father took him to the emergency room around 10 PM and I'm not sure what happened exactly but my guess would be the doctor in the ER that night was new and not familar with our son. His father told them if they did not admit him we would be back in the morning and he would be way worse then he was now. Well the ER doc at Childrens seemed to believe he should go home and not be admitted. So they came home, neither one of us slept, his apnea monitor was dropping low all night so in the morning, I dropped Bill off at work and had made a call to Joshua's regular doctor and was told to bring him in at 9, I dropped Bill off, then dropped my daughter off at grandmas and headed downtown toChildrens, I got into the clinic and his peds doctor was just getting in and looked at Josh, and went right back to the nurse and told her to get him right away back and to check his oxygen level and pulse (which I found out later). Well we sat there for what seemed like forever it was about 25 minutes and I kept rubbing Joshua's face and talking to him. He was all bundled up in his infant seat. I could see tho that his breathing was getting shallow looking. Well this nurse FINALLY calls us back and we took him out of his car seat and she panicked she put him on the monitor to check his oxygen level and it was so low his body was in the process of shutting down, she ran out of our room and banged on his dr's door to come quick, and that moment I knew this situation was really bad! Well in the midst of the nurses panic she stopped and asked me "Do you want to revive your son? I was pissed! I looked at her and said "Do we REALLY have the time to be talking about this?" I have not spent months doing everything I can in order for my son to survive and be okay for it to be taken away from me in an instant when we REALLY DO NOT have even 1 extra minute right now to be talking!" Well once they had him in the ER again and intubated and I called his father and grandma, grandma decided to call the heads of Childrens to talk to them about what had happened that day. They sent a few different people randomly thru out the day to talk to us and apparently my sons doctor asked this nurse "If Josh had been a normal looking child would you have taken the time out to ask if he should be revived?" and her answer was "no"! She tried to come and talk to his father and I later on in the afternoon and apologized repeatedly but my son was laying in critical condition in the Intensive Care I really did not care what she had to say. The whole situation was scary and horrible! I wondered for weeks, "Was is my fault?" "Could I have done something different?" After talking to all my family I accepted that I did everything I should have and handled the whole thing just right.I don't know all of this was so new to me, I had never in my life been trained to know how you would or would not or the do's and the don't at a time like that. Needless to say it was thatday that we decided yes Childrens Hospital is a wonderful hospital for certain children but our son was not one of them. They were not experienced enough to handle him, and it seemed at times when they really should have said "we do not know, we will send you to someone that is better qualified" they never did. Instead they took text book guesses and mislead us in so many ways. Once my son was strong enough to travel we headed to Washington DC for his first Cranial Reconstruction. My mother, and Bills mother and sister, and Josh's godfather and his girlfriend and another family friend all flew out there to support Joshua and us. This was the scariest thing I have ever experienced, I have never felt so helpless in my life! The night before my sons surgery we all went out to eat, and them came back to our extended stay hotel we were staying at and we got a call at 9:30 at night from Josh's cranio surgeon. He was calling us from his home. He started by saying "I have never made a call like this in all my years of being a doctor, but I had to call you two and tell you that I have the experience as a surgeon to do exactly what needs to be done. But the rest is in gods hands." He was worried if Josh was strong enough to make it thru such a severe surgery. We respected him for the honesty, but let me tell you hearing that the night 6 hours before we were due to be at Georgetown made it even harder! I will end this entry now and pick it up again later on tonight it is ohhhh so long ;)

Sorry I havent added more to my story yet. As usual life can get a little hectic. My grandmother has been in the hospital, but got to go home yesterday which was a huge relief! My children have all been sick. I sure wish summer would come and stay. It has been so cold lately. One day you need your heat on then the next it'ts so flippen humid you need the air on. Mother Nature must have pms this week lol. I cannot wait for summer to get here tho, I wanna go camping and fishing. We bought some fish from the grocery store the other day and fried it and it sure was great. But nothing like fresh caught cleaned fish! I get so wrapped up reading other peoples journals when I sign on that I forget to leave time to add to my own. I will try harder to update more frequently. I also plan on finishing the story about my son and adding lots of pics of different hospital stays and surgeries. I think I will end this for now and go upstairs and start getting some of the pics scanned onto my puter. I will be back later to add more to my story ;) Bye for now. Robyn

Thursday, May 5, 2005

I have learned that you cannot make someone love you. All you can do is be someone who can be loved. The rest is up to them.

I have learned that no matter how much I care, some people just don't care back.

I have learned that it takes years to build up trust, and only seconds to destroy it.

I have learned that it's not what you have in your life but who you have in your life that counts.

I have learned that you can get by on charm for about fifteen minutes. After that, you'd better know something.

I have learned that you shouldn't compare yourself to the best others can do, but to the best you can do.

I have learned that it's not what happens to people that's important. It's what they do about it.

I have learned that you can do something in an instant that will give you heartache for life.

I have learned that no matter how thin you slice it, there are always two sides.

I have learned that it's taking me a long time to become the person I want to be.

I have learned that it's a lot easier to react than it is to think.

I have learned that you should always leave loved ones with loving words. It may be the last time you see them.

I have learned that you can keep going long after you think you can't.

I have learned that we are responsible for what we do, no matter how we feel.

I have learned that either you control your attitude or it controls you.

I have learned that regardless of how hot and steamy a relationship is at first, the passion fades and there had better be something else to takeits place.

I have learned that heroes are the people who do what has to be done when it needs to be done, regardless of the consequences.

I have learned that learning to forgive takes practice.

I have learned that there are people who love you dearly, but just don't know how to show it.

I have learned that money is a lousy way of keeping score.

I have learned that my best friend and I can do anything or nothing and have the best time.

I have learned that sometimes the people you expect to kick you when you're down will be the ones to help you get back up.

I have learned that sometimes when I'm angry I have the right to be angry, but that doesn't give me the right to be cruel.

I have learned that true friendship continues to grow, even over the longest distance. Same goes for true love.

I have learned that just because someone doesn't love you the way you want them to doesn't mean they don't love you with all they have.

I have learned that maturity has more to do with what types of experiences you've had and what you've learned from them and less to do with how many birthdays you've celebrated.

I have learned that you should never tell a child their dreams are unlikely or outlandish. Few things are more humiliating, and what a tragedy it would be if they believed it.

I have learned that your family won't always be there for you. It may seem funny, but people you aren't related to can take care of you and love you and teach you to trust people again. Families aren't biological.

I have learned that no matter how good a friend is, they're going to hurt you every once in a while and you must forgive them for that.

I have learned that it isn't always enough to be forgiven by others. Sometimes you have to learn to forgive yourself.

I have learned that no matter how bad your heart is broken the world doesn't stop for your grief.

I have learned that our background and circumstances may have influenced who we are, but we are responsible for who we become.

I have learned that sometimes when my friends fight, I'm forced to choose sides even when I don't want to.

I have learned that just because two people argue, it doesn't mean they don't love each other. And just because they don't argue, it doesn't mean they do.

I have learned that sometimes you have to put the individual ahead of their actions.

I have learned that we don't have to change friends if we understand that friends change.

I have learned that you shouldn't be so eager to find out a secret. It could change your life forever.

I have learned that two people can look at the exact same thing and see something totally different.

I have learned that no matter how you try to protect your children, they will eventually get hurt and you will hurt in the process.

I have learned that there are many ways of falling and staying in love.

I have learned that no matter the consequences, those who are honest with themselves get farther in life.

I have learned that no matter how many friends you have, if you are their pillar you will feel lonely and lost at the times you need them most.

I have learned that your life can be changed in a matter of hours by people who don't even know you.

I have learned that even when you think you have no more to give, when a friend cries out to you, you will find the strength to help.

I have learned that writing, as well as talking, can ease emotional pains.

I have learned that the paradigm we live in is not all that is offered to us.

I have learned that credentials on the wall do not make you a decent human being.

I have learned that the people you care most about in life are taken from you too soon.

I have learned that although the word "love" can have many different meanings, it loses value when overly used.

I have learned that it's hard to determine where to draw the line between being nice and not hurting people's feelings and standing up for what you believe.

I am having one of those days lol! I am not feeling very well, and all and everything seems to be getting on my nerves, must be because I am sick. I still have lots to add to my sons story, but really want to start using this for the purpose I made it as my breathing room ;) It is finally getting warmer again here, man what a tease Mother Nature was a couple weeks ago! It was in the lower 80's and upper 70's then bam all the sudden last week again it was sort of snowing and 30 degrees. Well today it is 74 again so heats off for the 3rd time lol. No wonder everyone in my house is sick! My 8 year old is a great little girl with a heart of gold BUT man she can argue, she acts as tho she is 90 years old with all the wisdom in the world on ALL subjects not just some lol, and if she thinks she is right about something she will not let it go. And my 15 year old sister I raise is well need I say more? 15 year old girl? :) She is grounded until tomorrow, and called after school to see if a friend could come over and of course my answer was "No your still grounded" she didn't like that answer much so when I picked her up she had an attitude. KIDS! lol

On a whole different subject I was watching The Search for the Funniest Mom in America on Nickelodian a day ago and the woman who won is the nurse at the urgent care I go to, she just checked me in about a month ago. That was pretty cool to see! She is a single mother with 2 boys and won $50,000.00 and has a chance of being on her own series. How awesome for her! Then I was watching my tivo'd American Idol results and was surprised at the outcome, Anthony stayed? I thought for sure he would be the one going. Oh well I really not that hooked on any TV shows so it isnt going to ruin my week or anything ;) Well my son is going to be getting off the bus soon so I should get going. Bye for now......

Tuesday, May 3, 2005

I am picking up where I left off the last time I wrote in here. Joshua was born and taken to PICU (pediatric intensive care unit) immediately. He weighed 3 pounds 13 ounces, and his chest cavity was not developed all the way yet, so his chest looked like it sank in. I got a very quick glimpse of him before they left the delivery room with him. Within an hour I was in my room, and had his dad wheel me down to the PICU to see him (to get to the PICU there is a underground tunnel from Abbott to Childrens), and find out how he was doing. Man was I tired, but I learned really quickly how little bit of sleep or rest you need to be able to function half way. The first day was mostly curiousity and questions that were not yet able to be answered. Then on the 2nd day a world renowned retired Gynetisist Dr. Robert Gorlin came off the bench so to speak and met us at the hospital and he is the one who diagnosed him for us. That day we found out he had the 3rd thing on the list that we had during that ultrasound. Craniosynostosis, and the rarest form of it called Kleeblatschaedel, and the easier way to say it is Clover-Leaf Skull. Craniosynostosis is the premature closing of the sutures in your head. Now the reason his form was rarer then the others, is that alot of the children born with this have one or two sutures closed together, and Josh had all but one closed before birth. The only one not closed is the Squamosal. You may wonder what I am talking about, a good example is the soft spot on the top of all babies heads, if you feel it it is soft, and does not completely close for quite awhile, well that spot and more in my sons head were already closed when he was born. Dr. Gorlin then explained to us that there were 2 surgeons he felt were qualified to begin the process of helping my son survive. One was a surgeon is Kansas, and the other was Dr. Jeff Posnick.....http://www.drposnick.com/...... in Chevy Chase Maryland, he does all surgeries out of Georgetown Hospital in DC. We within a week of Josh being born, made a call to both doctors, the first one we called in Kansas (which would have been way closer to drive, as I am afraid to fly, lol) had a receptionist get back to us and was real impersonal. We were not comfortable with the feelings we got dealing with them. So we then called Dr.Posnicks office and withing a couple hours he called us back personally and we talked to him for over an hour. He happened to be from Minnesota and he said everything that needed to be said to his father and I that made us 200% sure this is the man we wanted to entrust our sons life with. Josh was nowhere near strong enough nor healthy enough to make that trip, so we just stayed in contact with him, and had all doctors notes, and CT's and MRI's and any other test done in the hospital sent to him, so he knew exactly what was going on with him at all times. I am going to stop here for now again, I may pick up here later tonight if I have the time. Once this story is complete I will turn this into a normal journal, of thoughts and whatever else comes to mind everyday lol